What not to say - our advice after the stillbirth of our daughter

Do’s and don’ts – our advice after the stillbirth of our daughter Rhianna Lily.

By Kerry, who lost her baby Rhianna Lily at 24 weeks 

What not to say after a stillbirth

Don’t call Rhianna’s death ‘the event’, ‘that thing that happened’, ‘the problem’, or ‘the issue’. Rhianna is and was our baby girl. She isn’t ‘an event’, she is our baby. She died. It is upsetting when her name is not mentioned.

Don’t assume that you know how we feel, because, to be totally frank, you probably don’t. Saying ‘I totally understand’ doesn’t help if you have never been through this. We both hope that you never ever will understand.

Don’t assume you know what we need. We barely know what we need. ‘You need to be around other babies, ‘You need to steer clear of babies.’ Only we know what we can do, and to be honest even for us it depends. How we react can be different depending on how we feel on the day, the distance we are away from them and whose baby it is.

Don’t assume you know what our answer will be. We don’t, so you really can’t.

Don’t leave us alone. You won’t catch this, it is ok. We can talk about other things. We still have a life. We are not consumed with just talking and breathing the death of our baby.

Don’t feel bad if you don’t know what to say, it is fine, neither do we. Just seeing people is fine, sometimes that is all you need.

Don’t feel bad about moaning about your lives. We hear this a lot: ‘So sorry, I shouldn’t be moaning after what has happened to you.’ It is fine, it is nice that you act the same. Do moan - we still want to hear about your lives. Act normally, talk about your issues, your child’s constant crying, don’t be scared.

Don’t assume, that because Rhianna was stillborn she meant any less to us than our other children, or that we aren’t grieving as much as the person down the road that lost their child when they were four. Rhianna was, is, our baby, our only girl and she always will be. She may not have laughed, smiled or sat with us. We don’t and won’t ever know the colour of her eyes. Her loss is no less painful than that of any child who has left their parents too early, whether they are stillborn or two, seven, 15, or 27. It is the most hurtful assumption you can make.

Don’t think we should be over it now. Yes 26 months have passed, but we will never be over it, we will forever be a family of five surviving as a family of four. I can tell you for certain we will get upset, when she should be starting school, leaving school, when you are walking your baby girl down the aisle, when your daughter gives birth. They are all things we won’t have, we will never have and we will still cry, be it five years, 16 years or 30 years down the line. We will never get over it.

Don’t forget her! It seems a silly thing to say, but write her name in our cards, mention her, text us on her birthday and Christmas and Mother’s Day and Father’s Day. Just remember her. Let her touch your heart and let us know. It’s a selfish thing but it’s hard not to hear her name. It’s hard for us to realise you do remember you just haven’t said it for fear of upsetting us. Say it, shout it with us and remind us you remember her.

Don’t be surprised if we still can’t see your newborn baby. The same as the above, it is still hard I don’t know if it will ever not be hard. Don’t take it personally if we step away. We aren’t unhappy, but our hearts literally crumble knowing we will never have that cuddle. I still can not walk through girl’s baby clothes aisles, I just want to curl up and cry. So don’t be offended if you have a girl and I buy you a puzzle, clothes are just too hard. Do accept that we may not be as full-on as we would have been. Please don’t be offended. Sometimes it is ok, other days it is too hard. We will get there but please don’t take it personally.

Don’t tell us our life is complete now we have had another baby. Don’t remind us we are lucky to have two beautiful boys. Yes we are but which of your children would you choose to live without? We are not complete, we never will be. We are not lucky, we are bloody grateful that we have two wonderful boys, but we aren’t lucky. If we were lucky we would have two wonderful boys and a gorgeous girl all here with us on earth. We don’t. To be honest just don’t even go down this road, it is too easy to say the wrong thing.

What to say after a stillbirth

Do ask if we are ok. We will more than likely lie, but it is still nice to be asked. There may be times that we will break down when we are asked so be prepared. It happens and we don’t always know when it will happen.

Do say Rhianna’s name, especially when talking about her. We won’t spontaneously burst into tears, and we won’t combust, she is our daughter and our family. We will always talk about her so you can too.

Do remember her. She was a part of so many lives even though she never breathed the air we breath so we want people to remember her.

Do say ‘You lead us.’ ‘You tell me when you can’t cope and I will step back.’ It makes us feel comfortable to tell you the truth and we don’t feel so bad when we need to say enough is enough.

Do understand that losing Rhianna changed us, and sometimes we will do things that you will not understand. They may upset you, but please try to understand. We didn’t tell anyone we were pregnant again. I was too scared. I didn’t tell some of my closest friends, but please don’t be mad when we do these things. We are surviving. Surviving the most terrible thing in the only way we know how. So please just understand why, and not take it personally.

Do talk to our other children about Rhianna Lily. Even the ones who didn’t meet her. Talk about her, tell him she would love him and that he has a big sister in the sky that looks out for her. Embrace heaven with them. Even if you don’t believe, they do, please don’t ever take their sister in the sky from them. Agree with what they believe, go with the flow and let them love her in their own way. Even if that is her shopping for pink glitter in the sky, agree!

Rhianna’s flower is a lily, and having people send us pictures of lilies brightens our day at times, knowing that people have them growing and are thinking of her.

Do remember we will always be a family of five, never just four.

Do get over your discomfort, none of this is easy, it never will be and we know it makes lots of people uncomfortable. If you can get over your discomfort maybe you have just got us through a day. Remember we live our days, but sometimes, and we never know when, we just survive the day, and you not being uncomfortable can make the difference between living and surviving!

Read more about supporting a friend or family member who has had a stillbirth here.

Read Kerry's blog about life after loss here.